Joe Rumney, creative designer at RARE Revolution Magazine, writes about the profound effect losing his mum had on his life and the subsequent questions which followed about how he would manage his rare disease on his own
For many of us embarking on this strange journey called rare disease, parents are what I like to call ‘life glue’. Especially when young, they take control of your life—they drive you to your appointments, administer medications like a fully-fledged pharmacist, pace for hours along hospital corridors as you undergo life-changing surgery, and most importantly, offer a shoulder to cry on when times inevitably get tough. No matter how old you are, and if you’re lucky enough, this connection never truly leaves.
What happens, though, when they pass away? This unfortunately happened to me at the beginning of this year, and only now am I strong enough to talk about it. It may be a fact of life, but that doesn’t make it any easier.
For some backstory, my mum lived with a condition called chronic obstructive pulmonary disease (COPD), which is by no means rare but equally as devastating. And around Christmas last year, her condition deteriorated faster than we had expected.
It’s ironic really, that one of the people who was strong enough to fight for my diagnosis, and subsequent health battles was now, herself, becoming weaker by the day. And the person I sat next to on the sofa each evening grew further and further away from that person I knew. I realised the roles had reversed over 25 years later, and now I was becoming the ‘strong’ one. There’s poetry in there somewhere.
Much like my mum did shortly after I was born, I was now the one driving to appointments, tracking down prescriptions that once again had been lost in the system, and of course, sitting for hours in Accident and Emergency. But it wasn’t until one day when I lost my temper when a GP receptionist told us to ‘come along another day’ that it finally clicked how frustrating my situation must have been for my parents throughout the years when I was so unwell.
And then, before I knew it, I was sitting alongside her hospital bed at five o’clock on a cold morning in January. I could feel it was the end. And cliché as it sounds, all it took was the silence of the hospital ward and my mind was away—Did I know enough about my condition? Will I know what to do when my health gets bad again? Who will make sure I’m given the correct medication after an operation?
My mum, my best friend and my ‘life glue’ had left me. It didn’t seem real, and honestly, it still doesn’t. For a good few months, I was plagued by my last memories of my mum, but rest assured, those memories were soon replaced by those of happier times.
I’ve found that as time moves on, you begin to realise your own strength to manage your rare disease just as well as those in your life who knew it most. Those doubts and fears did leave me. And while my health isn’t exactly peachy, I am confident in asking those questions to my healthcare team when I have doubts, maybe even more so than before.
While grief over someone you love never really disappears, I have learned to carry on in honour of my mum. After all, I wouldn’t be here without her—in SO many ways.
Here are some points that helped me to cope with my grief:
Connect with friends, family and even the unexpected
Don’t be afraid to ask for help and guidance from people around you. You’ll be surprised how willing people are to give you a helping hand from time to time. I found that not only did my friends and family comfort me after my mum died, but also my mum’s friends who I hardly knew before reached out to me and have now, almost a year later, become my closest friends too. Sometimes special relationships can grow in the darkest of times.
Don’t be ashamed to get help
While not for everybody, I found that grief counselling helped me process the complicated emotions that I was experiencing. Talking to a total stranger can actually help release some feelings which might have been embarrassing to share with family and friends. And if you’re not ready for face-to-face therapy, helplines and online counselling can be just as helpful, such as Rareminds.
Keep them in the conversation
The memory of a loved one who’s no longer here can be a painful one. I’ve found, however, that making my mum a part of the everyday conversation has made the grieving process a whole lot easier. When talking to my grandad, we’ll always laugh about something she would have said about a particular topic, and we often mention her terrible driving, which she would have fiercely denied!
Don’t rush the process
Grieving does take time—it’s a marathon, not a sprint. Unfortunately, it doesn’t have a finish line either, but it does change shape over time. Trust me, it won’t be as gut-wrenching as those first few months navigating life without them. Now, I can say I’ve reached a point where I can see a future for myself, just a slightly different one.
Read more about rare disease grief and bereavement in RARE Revolution Magazine’s Holistic Care edition.
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